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jefa

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Everything posted by jefa

  1. Hi, Lynne Isn't this a cool new sub forum? I am definitely not a doctor, but I wouldn't panic about ulcers unnecessarily. I have had itchy spots on the skin of my feet and painful Raynaud's attacks on my toes, but have yet to see any ulcers. Our page on Digital (Finger and Toes) Ulcers has a lot of good information and pictures so you can get an idea what you might be up against. I was always a barefooter before I came to Scotland and it was difficult for me to learn how to dress properly in this colder climate. I used to wear nothing but the typical German sandals with the moulded footbed. I added socks at first, then went to a clog version. Now I am wearing sheepskin lined pull-on boots. I had one of my worst Raynaud's attacks in July when I went out to bring in an empty wheelie bin that was blowing in a strong wind. It was perfectly warm, but the wind blowing across my toes caused the attack. I usually find that the itchy spots respond well to treatment with a good emollient.
  2. jefa

    Diet advice needed please

    Hi, Summer Here is our page on Diet and Scleroderma for reference. It is frustrating, isn't it? I don't have the bowel problems you have, but I am also struggling with weight gain from a combination of medications and lack of sufficient exercise. I am not a doctor or a nutritionist, but it seems that with your health issues, it might be a good idea to talk to one or both for help in finding effective methods for loss of weight. After talking to my doctor, he referred me to the hospital's weight management program and gave me an exercise referral prescription for a local leisure centre where I will be given assistance developing an exercise plan taking my physical limitations into consideration. The weight management program includes a twelve week nutrition class and possible consults with physical therapist and/or psychologists. I think it is important to have some kind of support system in place. Motivation is a big factor. I also use a desktop nutrition diary which allows me to track my nutritional needs against what goes in my mouth and the amount of exercise I do. The simple act of recording everything that goes into your mouth is often enough of a jolt to set things in motion. Good luck to you.
  3. jefa

    Disability Review

    I wish you good luck. I filed three years ago and I still do not have an answer. I am waiting for information on my request for reconsideration. Each case, as I am sure you know, is judged on its own merits. Filing should be done as soon as you are certifiably unable to work to seal the date. I don't have a precise diagnosis, but at least my date is protected.
  4. jefa

    New drug

    Hi, Birdman, it's good to hear from you. Sorry you are still having difficulties with your lungs. I know there are several people on the site who have had experience with Azathioprine (Imuran is one drug company's name for it). Hopefully they will share their experiences. Here is our page on Immunosuppressants which has a section on this drug: Azathioprine (Imuran). Patient Education. American College of Rheumatology. Twelve-month azathioprine as maintenance therapy in early diffuse systemic sclerosis patients treated for 1-year with low dose cyclophosphamide pulse therapy. This study suggests a role of AZA in maintaining the improvement induced by low dose pulse CYC in early dcSSc, making it possible a short duration of treatment at a low cumulative dose of the drug. These results, however, await confirmation in controlled studies. PubMed. Clin Exp Rheumatol. 2007 Jul-Aug;25(4):613-6. A randomized unblinded trial of cyclophosphamide CYC) versus azathioprine (AZ) in the treatment of systemic sclerosis. After treatment there was a statistically significant improvement in the modified Rodnan skin score, attack frequency of Raynaud's phenomenon, and erythrocyte sedimentation rate (ESR) in the CYC-group, but not in the AZ-group. PubMed. Clin Rheumatol. 2006 Mar;25(2):205-12. Epub 2005 Oct 14.
  5. jefa

    En coup de sabre

    Hello, nmh. Welcome to the Forums. I am glad you found us and hope you can learn something about your concerns which will help you find the treatment you need. Here is our page on En Coup de Sabre. From my brief scan, it does appear that this form of linear scleroderma is found in adults as well as children. I don't have any personal experience, but perhaps there are others who will share theirs.
  6. Hi, Perlina Sorry your message got overlooked. Thanks, Amanda, for noticing. How old is your granddaughter, Perlina? This procedure sounds very unusual. I'd like to hear more about it. Please let us know how the visit to the motility clinic goes in June. In the meantime, welcome to the Forums. I hope you will find them as informative and welcoming as I have.
  7. jefa

    Scleroderma Causes

    I laughed when I read your post, Amanda. I am pretty sure you were just kidding, but just to clarify, I believe microchimerism refers to fetal cells. On the same page Eos linked to (Fetal Cells and Scleroderma) is this article: Mothers And Offspring Can Share Cells Throughout Life. Cutting the umbilical cord doesn’t necessarily sever the physical link between mother and child. Many cells pass back and forth between the mother and fetus during pregnancy and can be detected in the tissues and organs of both even decades later. ScienceDaily. 05/08/08. They may never call or write, but somehow they always stay with you! :D
  8. jefa

    Skin biopsy questions

    Hi, Summer. There is a good description of skin biopsy procedure on MedicineNet.com.
  9. jefa

    Premarin (HRT)

    Hormones are on the list of potential Causes of Scleroderma. On this page follow the link to Hormones and Chromosomes in Scleroderma. You will see there is information on a 2006 lawsuit regarding another HRT drug, Prempro with scleroderma listed as a possible effect. I resisted advice to take hormone replacement therapy as my mother had breast cancer. You may want to read another active topic on possible scleroderma triggers.
  10. jefa

    Shingles and Sclero

    If you are looking for reliable resources in your search for information on topics not specifically related to scleroderma, please note our list of Top Notch Medical Websites on our Researching the Internet link from our Main Medical page. In addition to this list of reliable web sources, this page, Googling for a Diagnosis? Medical Web Resources and Warnings, contains information on fraudulent information on the internet.
  11. jefa

    Freaking out today

    Hi, eos. You really should have said, Hello. She might have been one of us. :D I have not had the same experience, but I have had many reality checks to do with signs of aging. Like when did people start giving up their seats to me on the bus? Or when a tiny silver-haired women, waved me in front of her getting onto the bus.
  12. jefa

    Raynaud's in feet

    Hi, Susie. I had to look up your waffle slipper reference to see what you were talking about and I discovered that there are quite a few sources for them online, so have a wee search.
  13. jefa

    Raynaud's in feet

    Hi, Linda Yes, it is possible (and common) to have Raynaud's attacks on the feet as well as hands and even other parts of the body as you will find on our main Raynaud's Main Menu page. Numbness and pain in the feet may not necessarily be attributed to Raynaud's though, especially since you mention that you have problems with callused toes. Make sure you are wearing comfortable shoes when you are out walking and that your socks also fit well and are dry. If your feet are warm before you put your well-fitting shoes and dry, well-fitting socks on, they are more likely to stay warm. You may want to carry a pair of warm socks in your bag to slip on if you are wearing sandals and find yourself in a highly air-conditioned restaurant. I have had a lot of trouble transitioning from one season to another when it comes to shoes. :huh:
  14. Hello Jeff and welcome to the Forums. So glad you found us and started asking questions right away before getting all freaked out about things. Here is our page on Vitamin D Deficiency, Sunshine, and Scleroderma. Hopefully it will fill you in. In the meantime, browse around and get to know us. Hopefully others will be able to shed some light on your other concerns.
  15. jefa

    Beginning of breathing problems

    I also have a problem with post nasal drainage and sometimes use an antihistamine during the season, too. Be sure to check with your doctor to make sure that the cough is caused by an upper airway allergy. Please note this warning found on our Treatments for Pulmonary Fibrosis page: Antihistamine Warning Symptoms - Lung and Airway Disorders. A warning about antihistamines and Lung Disorders. Antihistamines, which dry the respiratory tract, have little or no value in treating a cough, except when it is caused by an upper airway allergy. With coughs from other causes, such as bronchitis, the drying action of antihistamines can be harmful, thickening respiratory secretions and making them difficult to cough up. Merck.com.
  16. The List of Approved and Unapproved Alternative Therapies for Posting has been updated. We will continue to review and evaluate as new studies provide relevant information.
  17. jefa

    First time posting

    Hi, Crest at 16. Welcome to the Forums. I am glad you finally decided to post. We have a few members around your age. I hope you will get a chance to meet them. Here is a link to a recent post by one of them, our good friend Emmi, aka epasen.
  18. jefa

    Body Soreness

    Hi, Summer Here is our page on Fibromyalgia. A comprehensive list of treatment options is on the bottom of the page.
  19. This is terrific. Thanks for posting this, Janey and thanks to Tony, Suzanna and everyone else involved in putting it together. If you haven't been around the site, this is a good way to find out what's available.
  20. I agree, Shelley. As long as hang around here, I feel I'll live forever! :D
  21. jefa

    Update on Emmi aka Epasen

    I think this is all absolutely terrific, Emmi -- it is great to hear that you are managing so much in your life in spite of your difficulties: an inspiration to us all. I enjoyed reading your blog. I am very proud of you.
  22. Hi, me. :D If you would like to have a more suitable name, I can help you find something and change it for you. You can change it yourself through My Controls in the yellow tool bar. PM me with possibles and I can check against the register.
  23. jefa

    What's the point

    Hi, Jaxs. This all sounds very frustrating. Since I have talked to you in chat sessions before, I know that you are from the UK, so some of the otherwise excellent advice you have received may not necessarily apply. For those who are not familiar with the NHS (National Health Service) protocols, I will explain briefly. Each of us signs on with a General Practitioner (GP) who oversees our general health needs. In smaller areas there may only be one or two doctors, in larger areas as mine, there may be several clusters made up of doctors and nurses in a health center which also houses some specialist services -- mine has x-ray services, a psychologist, hearing testing etc. When certain clinical criteria are met, the general practitioner will refer a patient to a specialist clinic, most of which are located in nearby teaching hospitals. It may take several months to be seen the first time, but once you are are signed on with that clinic, you continue to be seen routinely for the duration of your illness by the consultants at that clinic. You might be seen more frequently at first, then quarterly or even twice yearly. During that time, your specialist/consultant, corresponds regularly with your general practitioner who in most cases does all of the prescribing of medications. Blood tests specific to the specialty are done by the consultant's staff, other tests may be done by the general practitioner. All results are sent to the general practitioner. At the moment I am seeing my general practitioner every 8 weeks (or in between if required) and my rheumatologist every 4 months. I am also currently being seen at a Gastrology and Dermatology Clinic. While you may be able to change from one consultant to another within a clinic, you do not have many options when it comes to available clinics. All clinics are held to the same standard of care as defined by NICE (National Institute for Clinical Excellence). There are channels through which you can report complaints of negligence through the NHS itself. It is true that all clinics are converting over to computer records. My own General Practitioner has his monitor turned so I can see it and he pulls up copies of letters from the consultants, blood test results, etc. All the medications are on the computer and he might refer to it several times in the course of a visit. While it is not so easy to 'fire' a doctor and we don't have the option of self-referral, it is still necessary at times to stand up and be counted. I have found the most effective way to get through is to go in armed with written questions or bullet points and insist they get covered. They are not mind readers. I have written letters a few times in the last ten years. I address the letter to the head of the clinic involved and cc: my general practitioner and my patient file at each relevant clinic. They have been effective. You can search for NICE guidelines on specific illnesses and find out precisely what treatment plan is considered the standard of care to make sure you are receiving the appropriate treatment for your circumstances. I hope some of this may be useful to you, jaxs. Let me know if I can help.
  24. Hi, Irene. Good to hear from you. Your timing couldn't be better. I usually end up seeing my results after I am in a position to ask questions and by the next time I have forgotten them. You have formed your questions perfectly. Print out your post in list form and take it with you to your rheumatologist. Ask him to answer all of these points directly. I don't have any experience which will help you with any of this but here is our page on Antibodies for you to research further. I suspect you have already spent some time there, anyway. :D Let us know how your appointment goes.
  25. jefa

    Weird foot pain

    It's awfully hard not to want to tally every symptom we have to scleroderma. In many cases, however, even when the cause of a particular pain is not scleroderma, the effects can be exacerbated by it, such as lack of flexibility in the tendons. It is important that we bring up all symptoms that arise to the relevant doctors so we can get appropriate treatment, regardless of the cause. Some years back I had excruciating pain from plantar fasciitis. As it was explained by my podiatrist, the plantar fascia, which is fairly heavy duty connective tissue structure at the base of the foot, develops micro tears at the attachment points under the heels causing the pain. During rest, even sitting for an hour or so, the tears start to heal. Then when you stand, they tear again. I had to wear orthotic devices for 90 days whenever I put weight on my feet. Even in the shower I had to stand on a rolled handtowel to keep my arches in the same position. I noticed that the orthotics were made by the same people who make the sandals Jill referred (can't mention brand names here) to so I switched over to them and wore nothing else until just recently. In the winter I wore the closed in versions, ugly as they were. I never had any more problem with the plantar fasciitis, but I too have lost the fat pads (it tends to happen to many people with age). Through the past two winters I have worn boots with sheepskin lining and the cushioning is wonderfully supportive and comfortable.
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